Psoriatic Arthritis

[TracyEllis25]

Hiya, anybody out there suffering with Psoriatic Arthritis? I was diagnosed about four years ago and am currently on Leflunomide after previously trying both Methotrexate and Sulfalazine, both of which had no effect on the inflammation whatsoever. Have recently undergone a total hip replacement (which was a shock as I am only 46 years old). Would like to speak to someone to learn of their experiences with this condition

[Hidden]

Hi Tracy and welcome. There are several people with PsA who regularly contribute - I'm sure they will comment soon. You are young to have had a hip replacement. Have you been recommended for Biologics yet? Tilda x

[TracyEllis25 in reply to Hidden]

Hiya Tilda, thanks for replying. Haven`t even heard of biologics?? Am keen to learn more. Tracy x

[earthwitch]

I echo the comment about biologics - its something to ask about if it hasn't been mentioned yet. There are slightly different criteria for them than for RA, but if you aren't getting good enough results on your current treatment then you should be eligible - especially if its progressed to the point of needing a hip replacement.

I don't have PsA but I do have axial spondyloarthritis (not enough damage for a formal diagnosis of ankylosing spondylitis). This message board is great for chatting with other UK folk, but for really solid disease information and a much larger community of folk, there are two international forums that both have a lot of people with PsA on. They are kickAS.org and the spondylitis association of america. If you google "ankylosing spondylitis forum" both of them will come up. There are a lot of UK folk on both of them, but the knowledge there is really excellent, and often incredibly practical.

[Hidden]

Hi Tracy, I have PsA which started in 2009 but did not get it's proper diagnosis until 2010, long story for another time, like I have I had all those meds, and am still on Leflunomide but with the added bonus of a biologic of Entercept, (trade name Enbrel).

If you would like to pm me with your specifics then I will reply to you with the best of my knowledge. There are several of us on here who have this disease and not mainly tied to the UK. Will look forward to hearing from you. Take care. x

[Hidden]

Welcome.. how are you recovering from that big operation? x

[TracyEllis25 in reply to Hidden]

Hiya Summer, I`m good now thanks although it was hard going for a while. My femur was fractured during the hip op and wasn't noticed for several days. I was up walking, doing physio, in absolute agony when they xrayed and realised my femur was in a shocking state. I had a further op a week later to fit plate/pins so took a lot longer to get over than it should have. All good now thankfully x

[Hidden in reply to TracyEllis25]

pleased to hear this x

[dapper]

hi ,ive also got psa ,been diagnosed a cple of yrs now ,im currently going to go back on mtx ,i was on it subcut before but had aa fair amount of nausea which got worse when they tried sulphazine aswell ,so i came off it and have been on leflunamide ,have they mentioned anti tfn to you atall ? id have thought if its severe enough for a hip replacement you qualify for much stronger drugs ,give your nurse a ring and ask her about it

[TracyEllis25 in reply to dapper]

Thanks for your input, any info helps as I am new to all this really. Have never spoken to anyone with same condition as me. Will chat to nurse in rheumy clinic next time I attend.

Thanks again

Tracy

[pdp1134]

For me, it first showed up 18 years ago. Since then I've had 1 hip and two knees replaced and a recent ankle fusion. When on Enbrel (for 2.5 years) the psoriasis part cleared up, but the rest of the system still declined. (Also on Methotraxate and Naproxen). Enbrel stopped working as witnessed by a number of brutal flare ups in my right leg and I switched to Humira, but stopped everything when the flares stopped and I had to prepare for surgery to my ankle. The psoriasis has returned in my scalp and in my ear canals (!).

I am ok to go back on Humira, but since I am not currently flaring, I have a philosophical problem with sticking my insurance company with a 2500/month bill for the drug. I'm sure all philosophy will fall when I start flaring again, but right now, God has granted me of window of just "normal" RA type pain that I control with Tramadol.

[beaton]

Hi,I have PA,I started with psoriasis about 35 years ago,nothing worked. About 5 years ago I had an accident at work which brought on PA,was seen in Truro Rheumy clinic for three years then they gave up.I had found ,thanks to a friend that doublebase help my psoriasis but the scalp is bad right now.As for the PA,still struggling along on my own.

Anyone out there come under Truro??

[Slightly_ginger]

Hi, I'm a new member, I've had PsA for a few years, thought to have been brought on by my biotherapy & radiotherapy for cancer. I have had Metho/sulfa/leflu without them helping me (I tried them orally and injections where possible), I am now on ENBREL weekly injections which seems to have helped greatly, also been on steroids for three years, which meant a lot of weigh gain, I'm now reducing prednisilone to 2.5mg per day as a route to finishing steroids altogether.

I'm a 48 yr old Dad of one, if you need any help questions answered let me know, I'm no expert but living with it I might be of some use.

Regards

[mariagomez in reply to Slightly_ginger]

my 21 son has PsA for 3 years now and is on methotrexate 8 tabs on Monday and 1 folic acid on Thursdays . He tried sulphasalazine and could no longer swallow it , turns

things yellow, not good... so now he is on 3 metho on Monday morning and 3 in the evening and 1 folic on Thurs morn and 1 folic in the evening. It helps as he gets so tired if he takes all 8 in one go and university is tough. He has Ps on his scalp and what

do you think will help with hair loss ... Has 2 hot showers daily... he also suffers

constipation and bowel problems... He now goes to a gym and has started protein whey shakes even though he is lactose intolerant.

What do you think of the above ... do you recommend anything